It's About Time

The following post has been saved as a draft for over a year now, so I decided to publish it. 

Note that it's out of chronological order from my last two posts.

I fell far off the blogging train. Now it's time to climb back on. I finished my last radiation treatment almost an entire month ago. My check up with my radiation oncologist is on Monday. My skin looks so much better, but it is still healing. I had some horrible skin peeling and ended up with very raw skin. The doctor called in a prescription for silvadene cream, which treats second- and third-degree burns, and that helped tremendously. I've also gotten the last of my fills. My plastic surgeon saw me only twice after radiation, but he managed to give me five fills in those two office visits. My skin is too thin to be stretched any further. I want to do the exchange surgery for implants soon, but he says that it might be a few months. I have to wait until my skin completely heals from radiation.

Last week, I also saw my medical oncologist for my three month check up. I had a heart scan the week prior, and everything looked good. My heart is functioning properly! One of the side effects of chemo is heart failure, so my heart has to be checked quite often. Here is the convo I had with my doctor:

Me: So....would you consider me cancer-free now?

Doc: Well, I don't like using that term. There is always a chance of recurrence, so saying that one is cancer free means that it will never come back.

Me: Okay....how about remission? Am I in remission?

Doc: Well, remission is not a good term to describe breast cancer. It's better used for other types of cancer, like leukemia. The best cure for breast cancer is surgery, and you've done that.

Me: What am I then?

Doc: You can say this. "I have a very good prognosis, and I've done all of the preventative measures to live a long, healthy life."

So, there you have it. It's time for me to enjoy my summer that I lost last year. There are still upcoming surgeries to be concerned about, but I feel 90% myself. Let's get this party started.

A note to cancer: You sneakily came into my life and turned it upside down. I must admit, you scared the crap out of me. I lost the easy going, carefree me. I'm afraid of my future, my children's futures, my parents' futures, my siblings' futures...But in the process, I gained some knowledge of life. At 34 years old, wise I am not. However, when Death visits so early, you learn a thing or two. I learned the importance of friends and family. I learned how to cherish every single moment. I learned to laugh and love often. I learned to take things slow and be peaceful.

I learned to be strong when I felt weak. This one is a biggie. Lots of people tell me that I am so strong and brave, and how they wouldn't be able to hold up if given the same challenge. It's not that I am stronger or braver than any other woman out there. Trust me, if you had to fight for your life, your children, your family, every single woman I know would rise up to the challenge. And every single one would look great bald.

Most importantly, I learned that I cannot control every aspect of my life. Surprises happen, you deal with it the best you can, and you learn from it. You move on, you teach others, and you don't dwell. (Although I've been known to dwell in the why and how.)

So cancer, how does it feel to get your a*% kicked? -Chinh

Recap

So I revisited the blog today, only to realize that I haven't posted in way over a year. I skipped all of radiation and reconstruction. Today's post might be lengthy since it seems I'm only blogging about once a year. (I really need to change that.) To help keep all of the dates straight, I'm recapping milestone events on this timeline. 

3.31.12     Diagnosis-Stage 2A breast cancer (IDC)

4.7.12       Lumpectomy and Sentinel Lymph Node Dissection 

4.20.12     Lumpectomy (DCIS removal) and Axillary Lymph Node Dissection

4.26.12     BRCA-1 diagnosis

5.25.12     Port Surgery

5.31.12     Dose dense Adriamycin/Cytoxan Chemo x 4

8.3.12       Taxol Chemo x 10

1.18.13     Double mastectomy

3.7.13       Radiation x 28

7.19.13     Implant exchange surgery

9.9.13       Second implant exchange surgery due to capsular contracture

6.3.14       Hysterectomy

8.6.14       Infection-5 day hospital stay 

9.5.14       Implant removal

That about sums it up. Radiation was a boring, daily chore. The treatment itself wasn't painful. But in the end, my skin was extremely burned, irritated, and the cause of many future reconstructive problems. 

My first exchange surgery from expanders to implants was unsuccessful. The capsular contracture set in too quickly, so I had to exchange those implants for form stable (gummy bear) implants. 

All was good until I came down with flu like symptoms and had to be hospitalized for 5 long days back in August. The doctors couldn't figure out what was wrong with me. Thank goodness they ruled out necrotizing fasciitis. Not only did I have a consistently high fever, my blood pressure was low and my heart rate was high. My left breast was red and painful to the touch. I was on the strongest antibiotic, and my symptoms still did not improve. The antibiotic was switched due to an allergic reaction, and I was finally released with a PICC line to administer Daptomycin for 10 days. The decision to remove my implants was finally made when my plastic surgeon realized that I wasn't improving. The infectious disease doctor had been pushing for surgery all along. So you're telling me that we could have gotten this done and over with when I was in the hospital?!?! I had to suffer through pain and stress for a whole month? 

The implant removal surgery went well. I was stuck with those horrible drains again. Seriously? Like I hadn't already been through enough, one of the drains caused my skin to form huge, painful blisters. 

Almost 8 weeks out of surgery, and life has resumed itself. My new normal is trying to figure out how to look good in clothes, so it's not obviously clear that I am completely flat chested.

Even with all the surgeries and recoveries, our little family has been able to squeeze in some quality family time these past few months. We visited Seattle in May, stayed at a beautiful Park Hyatt for my birthday, went camping at Barton Flats, traveled to Mammoth, and played at Legoland! 

Now that my list of cancer related events is getting shorter, I can get this blog back to it's original roots- documenting and preserving memorable moments with my two little rugrats. 

First day of school, August 2014

Matthew, 8 years and Peyton, 5 years

Mammoth, Labor Day Weekend, 2014

Park Hyatt Carlsbad, Fourth of July, 2014

The Lotus Flower

Out of the darkness

The struggles I have endured

My life, I take back

-C. Nguyen

Mirroring my life this past year is the lotus flower. The lotus flower starts out growing in muddy pond water, far away from the sun. Once it comes to the surface of the water, it blooms into a flawless and delicate flower. What perfect symbolism, agreed? In different cultures and religions, the lotus flower represents many ideals. Rebirth, life, purity…For me, this timeless flower is a daily reminder of the beautiful life I have after my battle with cancer. 

It has been a relaxing summer. We didn’t take any trips anywhere, but I still enjoyed every minute of it. Sleeping in and being lazy rocked. Now it’s back to the busy-ness of work and school. I am still recovering from reconstructive surgery that I had last week, where my plastic surgeon exchanged tissue expanders for implants. 

Tony and I started this blog soon after Peyton was born. She is starting Kindergarten this year (insert tears), and Matthew will be in second grade. So much has happened between then and now. Watching baby videos of both kids brought back so many happy memories. Memories of days when cancer was just a word. A word that had no connection to me, and BRCA-1 was just a mouthful of random letters. Today, that word and those letters will always be a huge part of my family history.

BRCA-1

The unwanted connection

Break the bond that is

-C. Nguyen

Cancer-versary

March 31st...the day came and went without a thought that exactly a year ago, I was diagnosed with breast cancer. Of course, I couldn't get my mind off of it the days prior to March 31. How do I feel a year later, after having gone through some life changing moments? Where am I now in this whirlwind of events? Where is my life headed after this? I don't have any answers. I'm still confused and angry as to how this all happened to ME, cancer, of all things!

I vividly remember celebrating Easter with my brother and sister last year. We did it a week early because I had surgery the following week. We spent quality time with each other and really enjoyed ourselves. But it was awkward because everyone was scared about the future, yet no one wanted to talk about it. It was a very somber mood. Here we are, a year later. We thoroughly enjoyed Easter this year as well, but the mood was much lighter. I've successfully sailed through several major surgeries and six months of chemo. We are traveling downhill from here, friends. Several more radiation treatments, reconstruction, and a full hysterectomy is still in the near future, but the toughest parts are behind me.

My body has gone through a million and one things. Every time I look at a picture now, I relate it to either pre or post-cancer. Pre-cancer photos depict happier, simpler, worry-free times. Post-cancer photos seem pretentious, like there is some sort of a film covering it. Smiling as if everything is normal and okay again, when it truly isn't. Life will never be the same for me and I kind of hate that. I don't want to worry about this beast ever returning, but it's part of what I do now. Worry, stress, panic, freak out. The list is endless. My doctors and I are taking every extreme approach possible to prevent recurrence. But I still need a guarantee, which no one can give me.

By the way, radiation is going pretty well. Twelve down, thirteen more to go. My skin is starting to darken a little from the treatment. I'm crossing my fingers that the burn will be mild.

So, does one celebrate a cancer-versary? And if so, how? Perhaps not celebrate, but give notice to. Should I have a nice dinner? Watch a movie (does Game of Thrones count)? Reflect? Mope around and feel sorry for myself? Be happy that it's been a year and I'm still alive? Be upset that I even have a cancer-versary? Maybe get a tattoo to commemorate. I'm not too sure about what one does in such a situation.

But I do know that March 31 will never be forgotten. It will always be remembered as a Life Altering Day. Just like the birth days of my children and my wedding anniversary. It's a Life Altering Day. But of course not in a celebratory kind of way. Momentous, yes. Celebratory, no. It will be remembered as the stupid day that cancer entered my life. The day that Death briefly visited, but left because he knew it wasn't time.

Thank you all for following my journey with cancer through this blog and supporting me this past year. I am one lucky gal to have so many friends and family that not only celebrated the milestones with me, but also helped me power through the tough times. Lift off the film and smile like you mean it.

Deflated, Lopsided, and Flat

Blogger world, I think about you often. Very often. But I'm just too lazy to get on the computer and start writing. You know, these posts take me a really long time to draft. So much has been going on since the last update. I have a visit with my plastic surgeon today to deflate my right side, the non-cancerous side. Why you ask? Let's rewind a bit.

Since my last update, I was fully expanded on both sides. Then a week later, I had to deflate my left side to prepare for radiation. Now that was quite an experience. I was hooked up to a tube that led to a sucking machine on the wall. The machine was connected to a huge measuring cup. When the machine was turned on, the saline was sucked out of the expander and into the cup. The whole process took about 30 minutes and a total of almost 400 cc's was extracted. The end result was scary. I thought that my extra skin would just sag, but it didn't. My left foob (fake boob) was left to resemble a crater, with the outer edges being the expander. It isn't pretty. Now I'm completely lopsided and I have to stuff my bra to be somewhat even.

Fast forward to yesterday. I had my CT planning appointment, which is designed to set me up for radiation. Basically, it's a CAT scan of my chest wall to determine where the rays are going to hit each time I go for radiation. I would also leave with red marks and dots on my chest so they know where to put my tattoos at the next appointment. After I got the scan, I was told that my right side was interfering with the angle of the beams. Which means I have to deflate it. Seriously? Luckily, I already had a scheduled appointment with my plastic surgeon today that I didn't originally need, and they had a cancellation this afternoon for another CT planning. So I'm back on schedule. But still, seriously? You might be wondering, like Tony was, what happens if someone had a real boob that got in the way? Well, real boobs are squishy and when one lies down, they fall to the sides. A foob with expanders in them stays in the same exact position whether one is standing or lying down. They are hard as a rock and they don't move at all. I'm sure my plastic surgeon will be less than enthused about this dilemma, but I have no other options. On the brighter side, I don't have to stuff my bra anymore. Equally flat on both sides.

I've been on the fence about my hair lately. It's getting a little out of control, especially around the ears. When I wake up in the morning, it is a lot out of control. There are cowlicks everywhere. What should I do??? I'm so scared to get my first post chemo haircut. It still seems so short. I also want to color it something fun to fool people that I actually want my hair to look like this. As if it was cut short on purpose. Charlize Theron style. You know, the artsy type that I am totally NOT.

Nipple-Less

I've been MIA for a few weeks. Sorry about that. It's been about two and a half weeks since my surgery, and I am still not fully functional. I'm still taking pain meds 'round the clock. I've been reading a lot of blogs and forums about other women's experiences with their mastectomies. It seems like most women recover quickly and are in minimal pain. What is wrong with me?? I usually bounce back quickly from surgery, but this time, I got my butt kicked. Big time.

What I had was a bilateral mastectomy and immediate reconstruction. The surgeon removed both breasts, nipples and all, then inserted expanders under my muscle. He also put either 240 or 260 cc's of saline in each expander; I can't remember the exact amount. The purpose of the expander is to stretch the skin to the desirable size and then replace them with permanent silicone implants in the future. Each week, I go in for a fill. Last week was my first fill of 60 cc's in each side. I can't say that the procedure was painful; it was definitely uncomfortable though. However, the day following the fill, I was in excruciating pain and had to ask my oncologist for a stronger painkiller. The new drug I was prescribed is like a legal narcotic, and it really messed with my head so I stopped taking it.

My next fill is tomorrow and I am not looking forward to it at all. My skin is peeling from being stretched so much. I don't know how it's going to react to radiation in this condition. As the title of this post states, I am without nipples. It's sad to look at two rock hard mounds, each with a 3-4 inch lateral scar. I desperately want this whole journey to be over with. I'm tired of seeing doctors every week, and I'm tired of all the surgeries. I want my life back already!

The small syringe was used to numb the skin, and the big ones were used to inject saline into each expander.  And to think, some women get more than 60 cc's at each fill! Ouch!

It's been 3 1/2 months since my last chemo. When will my hair be long enough to style, so I don't look like a boy??

Bye-Bye, Bon Bons

That's what Peyton calls them. Bon bons. Twas the night before my double mastectomy and how do I feel? Anxious, mostly. Have I told you how much I hate getting an IV? Remember how the nurses laughed at me because they couldn't find my vein? Sleep has not been my friend these last few days. Last night, I dreamt that I was late to my surgery. No matter what I did, I just couldn't get there.

The one thing that is different about tomorrow's surgery is that I had time. I was only given one week notice for my lumpectomies. I had over a month's notice for this one. What does that mean? Time to plan, organize, clean, and above all, be anxious.

The kids have been asking about my surgery. I have no idea how to explain to them that my old bon bons were bad, so the doctor has to remove them and give me new ones. So, I just said that the doctor wants to make me all better. Of course, that is an unsatisfactory response for Matthew. Too simple of an answer. In his eyes and Peyton's as well, I'm not sick. Why visit the doctor when I'm not sick? Makes perfect sense, right? I love the innocent and untainted minds of children.

I'm glad that my surgery is at 7:30 am. Being the first case means the doctor can't run behind and make me wait. Because that would suck. Waiting sucks. I feel bad that Tony has to wait for the surgeon to come out and tell him that everything went fine. Then he has to wait until I wake up before they even let him see me.

Well, I have a big day ahead of me, and I still need to finish some laundry and pack for the hospital. New, cancer free bon bons, here I come!

 Enough hair to go hat-less in public? 

New Year, New Me

Wow, it's been awhile. I've thought about blogging so many times over the past few weeks, but I just haven't had the energy to do it. Now that the holidays are over, I need to get back on the wagon. Christmas was absolutely wonderful this year. So many unforgettable memories were made. When I was first diagnosed, I was deeply scared that this would be the last Christmas spent with my friends and family. My outlook on life has changed so much these past few months. I first went through shock, then denial, and finally acceptance. I'm learning to document my life with more photos, videos, and journaling. I don't want any special moments to be forgotten.

My double mastectomy is scheduled to be on January 18. I'm trying to prepare for it by organizing the house like crazy. Since my recovery will be at least 3 weeks, I want to make sure that things are in order. After my recovery, I will be getting radiation daily for 5 weeks. I anticipate being on medical leave for at least two months, which means I need to get my long term sub ready. Just another thing that I need to take care of. It is not easy to prepare a complete stranger to take over your classroom for a long period of time.

The plastic surgeon I met with came highly recommended by a friend of mine. He estimates that my whole reconstruction process will take about two years. Radiation complicates things because it ruins your skin. He says that he will need to use my latissimus dorsi muscle and skin from my back to help create new breasts. This will be in addition to implants. I was bummed that he couldn't use my stomach fat! I really do have excess tummy fat and skin, just not enough to make new breasts. Bummer. All of the additional surgeries will take place after radiation and after my skin has been fully expanded. A day after the mastectomy, I will leave the hospital with expanders and drains.

So the anticipation is building. I'm trying to keep busy to avoid freaking out about this whole thing. Because I am really freaking out. This is not my first surgery, but it's a major one that will leave my body deformed for awhile.

Since I'm typing in bed right now, it's too dark to take any pictures. I will post an updated one soon. Happy New Year, everyone! May 2013 be an amazing year full of love and happiness! 2012 sucked for me, so I'm looking forward to new beginnings!

My New Norm

*Double sigh.* When a post starts like this, something's gotta be up, right? Well, I guess I can start by saying that my hair is growing back! It looks and feels like peach fuzz! Now THAT is definitely something to celebrate.

On to the *double sigh." I've had an insanely busy day, and I wasn't even at work today. It started with Matthew's trimester awards assembly. I dropped him off at child care and graded papers in the car, while waiting for the assembly to start. Once it was over, I rushed over to the post office to mail out Christmas cards (early for once). Then I headed to Ontario for my appointment with the radiation oncologist. Let's say that I should have brought Tony with me. I really needed an extra ear or two to decipher through all the medical terminology.

Dr. Ong is my radiation oncologist. She is caring and attentive. I was impressed that she knew so much about me and my cancer before I even met her. Days before this appointment, she met with her team of oncologists so they could review my chart and discuss the best treatment for me. Dr. Ong pulled up my pathology reports and went through each finding thoroughly with me, making sure that I understood where my cancer started, what it looked like, how it acted. I felt like I was being diagnosed all over again. Sure, I knew that I had the most aggressive, invasive kind. Invasive ductal carcinoma, grade 3. Tumor size 1.4 cm. Two positive lymph nodes. But I wasn't aware that they found some in my blood vessels. Lymph-vascular invasion present. All of these risk factors, combined with my young age and BRCA+, made me a good candidate for radiation.

She also pointed out that I'm triple-negative. If you google triple-negative breast cancers, you will quickly find that it is not a good thing. That means that Herceptin (used to treat Her2+ patients) and hormone blockers cannot be used against my cancer cells (although I am taking Tamoxifen). Chemotherapy is most effective for triple-negative breast cancers. I told her that my oncologist had my sample tested twice and both times, it came back as progesterone positive (2-3%). She said that number is so low, it's practically negative.

She then drew pictures of where the radiation beams will be hitting my body, all while explaining the possible side effects. Partially radiated lung. Higher risk of lympedema, which might involve physical therapy. Messed up skin. Tattoo marks where the beams will hit. My mind ventured off a few times because it was too much information. All of this talk about cancer again was bringing me down. I was just starting to feel good too, almost back to being myself.

Finally, she recommended that I get the bilateral mastectomy before the hysterectomy. She wants me to start radiation soon after the surgery and waiting until February or March is apparently not acceptable.  Because we need to continue treatment for the cancer, the hysterectomy can wait. Makes sense, I suppose.

I left the hospital in pretty low spirits. I'm not mentally prepared to do this.

The next few hours were spent shopping for toys, toys, toys. It wasn't even fun. I was by myself and I couldn't make decisions. I suck.

The last part of my day was spent at the endodontist getting a root canal. Yeah, I really did ask him, "How do I know if I'm numb enough?" He just laughed. Never met anyone like me, huh, doc? Today ended with one last visit to Kaiser pharmacy for antibiotics.

All this, in one day. It must be my new normal. Because crazy days like this are happening more often than not.

1 Month Post Chemo

I had been looking forward to my one month check up for a while now. I actually took the entire day off, thanks to a wonderful sub that offered me a free sub day. I ran a ton of errands in the morning, then met Tony at home for lunch.

It felt really weird to drive to Kaiser, being that it's been 4 weeks since our last weekly visit. I was sad when I checked in because it was not the same lady that I'm used to seeing. It was some strange guy sitting at her desk! I made such a big stink about it that Tony finally said she's probably on vacation and all of her teddy bears are still on her desk, so she still works there! Then we noticed that someone taped an arrow pointing to the elevator button because people have such a hard time finding it. I told Tony that there were just too many changes in only 4 weeks. How come those little changes affected me so much that day? I still can't figure it out. I mean, I was upset that we didn't take a picture of the stupid arrow made out of tape! That was just the beginning.

I felt really sad as I was walking down the hallway to my oncologist. We had to walk right past the chemo suite. Even Tony, who is not normally bothered by much, felt an odd sense of remembrance.

Anyhow, Dr. Chan referred me to a radiation oncologist to discuss the possibility of me needing radiation. I asked for the best one and his response was that they were all up-to-date. I said I'm sure they are, but I'd like to see the best one. He avoided my question and said that I'd see the technicians more than the doctor.

The big news this time is that I was prescribed Tamoxifen, a hormone blocker. I've read a lot about it, so I'm very familiar with the side effects. See, Tamoxifen is usually prescribed for people whose cancers feed off of the hormones estrogen and progesterone. I was estrogen negative and very slightly progesterone positive (2-3%). Studies have not shown that Tamoxifen is beneficial to people like me, but he wanted me to try it anyways. It is a five year commitment. The side effects are menopausal symptoms, such as hot flashes and mood swings. In addition to all that, muscle and joint aches can be a problem as well. I told him that all of those things will happen to me anyway because of my upcoming hysterectomy and oopherectomy. He agreed, but said that Tamoxifen would be intensify them. He also said that if my quality of life is severely affected by the Tamoxifen, I can refuse to continue it. I see him again in two months for a follow up. So far, Tamoxifen is a thumbs down for me. A daily pill that makes me feel like crap. No thanks. But I will take it and make a final decision in two months.

Here are some questions that I had prepared for him:

Me: Can I go to the dentist?
Answer: Yes, now that you are done with chemo.

Me: Can I tattoo my eyebrows? I mean, I know I can get double eyebrows if they grow back in a different spot, but it really stinks to draw fake eyebrows in EVERY morning. Sometimes, it takes 20 minutes to make them look the same!
Answer: Um, sure.

Me: Is there a special shampoo that will make my hair grow back faster?
Answer: No.

Me: But if there WAS a special shampoo, can I use it?
Answer: Um, sure.

Me: Are the Tamoxifen pills like huge horse pills?
Answer: No. (insert funny face here)
Tony (who never says anything during my visits): They're just regular horse pills.

Dr. Chan must think that I am so vain, which I admit to being, but come on now, wouldn't you have wanted to know those things? Well, maybe not the eyebrow thing, because that's just vanity speaking right there.

So...because he gave me permission to visit the dentist, I called as soon as I got into the car. They squeezed me in the following day. Turns out I need a root canal! Boo-hoo. Seriously??

*Sigh* Well, the good news is I have this entire week off from work. I will be having minor surgery on Wednesday to remove my port. Not looking forward to being awake while Dr. Morton opens the incision to pull the catheter out. I heard they superglue the incision back. To be honest, I'm scared!

Next Thursday, I meet with my radiation oncologist AND the endodontist for my root canal. Wish me luck.

No eyebrows. See what I mean, people? You would ask too.

Happy Thanksgiving, everyone!! XOXO

Mortality and Death

Today's topic is not meant to be morbid at all. It's just that these issues arise when you have been diagnosed with a life threatening disease. It doesn't help that I recently read a book narrated by Death himself. A great read, by the way. It's called The Book Thief, for those of you that might be interested.

For most of my life, I always thought that I'd live to a ripe old age. Not that I still won't or can't. Matter of fact, I think most people imagine themselves living until pretty much forever. Then something like cancer enters their life, and boom, they realize that they are mortal. TOO mortal. Here is a story I'd like to share:

Matthew has been learning about bats at school as part of an October unit. His class read the story Stellaluna, which is about a bat that lost his mom. One of the questions he had to answer was, "What would you have done if you were Stellaluna and had been separated from your mom?" His written reply, "I would have tried to find a new mom." I wanted to cry at my son's innocent response to such a simple question. Because, of course, to me, that answer holds a much deeper meaning. Kids are resilient, yes, I know that. But how much would my children remember me, at 4 and 6, if they were "separated" from me? I would want them to remember me, but I'd also want their lives to continue normally. I would want them to find a new mom. Matthew recently said that you don't need the person to physically be there because they will always be in your heart and in your brain. Spoken from the true mind of a six year old. 

We are all mortal. Every single one of us. Knowing that is the easy part. Accepting that is the hard part. 

Mom, the Alien

Here is how the last 30 minutes went in my house:

Me: Honey, I need you to take pictures of my head, so I can document my weekly hair growth.
Tony: Ok.....(with a weird look on his face.)

We started with the digital camera.

Tony: This is the best I can get.
Me: OMG. Is that what my head really looks like? The top has no hair at all? That's horrible. It's so ugly. By the way, I need a picture of my eyes too, so I can see my eyelashes.

We upload the photos and they really are hideous. I even debated on whether or not I should put these on the Internet for all to see. I ask Tony if he can use Photoshop to make them look better. He modifies them a little bit as the kids walk into the office.

Matthew: (looking at the picture of my head) Ewww...gross.
Tony: It's not nice to say that, Matthew.
Matthew: I thought it was an alien. I didn't know that was mom.

So, Tony decides we'd better use the DSLR to get a better shot. I was still not happy with the pictures, but he said that's what my head really looks like and there wasn't anything he could do to change that. I tried to Photoshop them myself, but nothing worked. So I present you with these unedited pictures of my spotted head and eyes with pokey lashes. The second picture almost looks as if I have eyebrows. But it's really just where they used to be. I hope to see some improvement over the next few weeks.

This weekend, I've been feeling pretty run down. It could be that Peyton and her cousins are all sick, and I could have caught a virus from them. My whole body was achy today, to the point where I could barely walk. I rested all day and it helped a lot, but it's back to work tomorrow. Report cards are due, and conferences are the following week. So there's no time to slow down and take a break.

On another work related note, my coworkers are absolutely wonderful. They spoke with the district and set up a bank where people could donate their sick days to me. Although chemo has ended, they are encouraging me to use those donated days to take at least one day a week off until the end of the school year. I think I will start doing that after conference week. An extra day off each week will help my body recuperate sooner. I just need to relinquish control and let others help me. That's been the hardest part so far. Asking for help and also accepting it. Sometimes, I think I'm invincible and I can do it all. Then I realize that I'm mortal, all too mortal for that matter. But let's save the subject of mortality for another post, shall we?

Words on My Last Chemo: Bittersweet

Here I am, on the night of my last chemo treatment. Sitting at the kitchen table, on my iPad, drinking coffee with pumpkin spice creamer, listening to the Enya channel on Pandora, with a Marshmallow Fireside scented candle burning away. Oh, and don't forget the jars of fresh flowers. Lovely. Can you imagine it? It looks like this:

So serene. So peaceful. I think I'm ready to meditate. I close my eyes for a few seconds and savor this moment. It's the small things, you know. That's all that really matters. A hug from a friend. A smile from a stranger. Brushing Peyton's hair. Watching Matthew dance. Staring at my husband without him knowing. Thinking about nothing and everything, all at the same moment.

I had a hard time sleeping last night because I had mixed feelings about today. It's a huge milestone, and I should be jumping for joy. Instead, I am sad and you can say, even a little depressed. My security blanket is gone. I found comfort in going to chemo every Friday. Today marked my 20th treatment since June. There was no gradual weaning process. It seemed too abrupt, kind of unfair to be honest. Going to chemo meant I was actively doing something to fight the disease. Not going means I'm venturing into unknown territory. The unpredictability of the future scares me. Not being in control of my life scares me. But my nurse reassured me that I have done and will do all that I can, and that is the best that I can do for myself. Bittersweet.

The nurses put a crown on me to celebrate my last treatment.

 

Close my eyes. Savor the moment. The music, the candle, a sip of coffee, and a smile slowly spreads across my face.

I love my friends. M and D surprised me this morning with balloons, flowers, and some very thoughtful gifts. They gave me Mentos (my fav candy), bobby pins, and hair clips! How I hope to be able to use them soon. After dinner, my brother and sister in law surprised me with a cake to celebrate this momentous day. Delish. Thank you guys for making today a special one. 

 

Remember. It's the small things. Laughing when Mace continuously tried to pinch my neck. Trying relentlessly to get a kiss from Airi. My dad giving me a kiss when he first saw my bald head. The way my mom carries Peyton out of the car every morning. The way Matthew walks down the steps at school. The way my sister fixes her bangs.  My brother in law and sis in law visiting and bringing me my fav drink from Ten Ren's. Tony washing dishes and telling me he doesn't need help. How M comes in my class every morning to ask how I'm doing. How D texts me every week to check on my health. The way my brother plays with the kids. The way my sister in law takes care of Matthew and Peyton. The way Emi smiles. How my cousin, Tai, is growing out his hair to donate it. I have to remind myself of the small things in life that make me happy. I have to write these things down because I don't want to forget. Ever. 

I can't wait to see my childhood best friend. She will be visiting us this weekend, along with her husband and two kids. They live in Texas and I have never met her children. The last time we saw each other, Matthew was probably about 2 months old. I'm very excited about her stay with us!! 

Whose idea was it to drink coffee at 10 pm? I guess I can catch up on some Jersey Shore. Can't wait to see the bar fight. The small things, ya know.

Taxol Side effects

I keep forgetting to list my side effects. Now I'm not one to complain, but if you ask me how I am doing or feeling, I will be completely honest. I feel run down and TIRED. My body aches everywhere. Peyton is pretty rough and it actually hurts when she tries to hug me really hard. Every week, the nurses run through a standard list of side effects. I usually answer none to mild for every question, but lately, I've been saying mild to moderate. Especially for fatigue and pain. It's pretty pathetic when I lose my breath just walking from my car to my classroom.

The neuropathy has also been an issue. My left toes are tingly and it hasn't gone away since last week. I have neuropathy in the tips of my fingers too. The oncologist classified it as a grade 1, which is very mild. He said at this point in time, he is not going to change the dosage of my last two treatments. If I had developed it earlier, he might've reconsidered. The nurse in the chemo suite was worried and she wanted me to inform them if it got any worse. But I know my oncologist is adamant about getting me to the finish line. My fingernails also hurt really bad. Not only are they gross to look at, but I have a hard time using my fingers to open things. 

I've heard the side effects can last for months after treatment. Let's hope that's not going to happen here.

Say what? Two more???

Anticlimactic. That's the word I used with my oncologist to describe my last chemo treatment. Since June, my life has consisted of weekly blood tests, chemo, and an overall tired, beat up feeling. With my last chemo scheduled for next Friday, it will be so weird to have my life almost back to normal again. Will there be a party in the chemo suite? Should I bring cupcakes and cookies for all the wonderful nurses? How will I celebrate? The answer is, I probably won't celebrate. It will be like any other Friday. When the machine beeps, I will walk out of there and wish all of the nurses a great weekend. Only this time, I will not say see you next week. I will keep walking and hope never to come back.

I received a reply from the surgeon that will be doing my hysterectomy. She wants me to take a 2-3 month break after chemo before I go back into surgery. I was really hoping to get it done at Thanksgiving break, but now it looks like January. The bright side is I will get to enjoy the holidays, hopefully with some hair to keep my head warm!

On the hair note, hmmm...I am very anxious to see it grow back. I have some new hair growth, but most of it is WHITE! Peyton keeps trying to pick at it, saying that I have string stuck on my head. When I told her that it was hair, she called me an old lady. Of course, to her, only old ladies have white hair. My eyebrows are 98% gone. There are exactly 2 strands on my left side and 5 on my right side. My eyelashes are about 95% gone. Actually, I see lots of stubby roots if I look closely enough in the mirror, like it's trying to grow back. My nose hairs are 100% gone. All of it. Who knew those little nose hairs were so effective at keeping runny noses at bay. With no more nose hairs, my nose runs all the time. Ick.

Until next time friends. Here is to feeling better soon!

Call Me Crazy

Wow, I can't believe how long it's been since I last blogged. I apologize to those who have been checking my blog, only to see that it hasn't been updated. Where do I begin?

I guess we can start with the known fact that yes, we've moved again. Crazy, you ask? No, I don't do crazy things like that. It's only the beginning of the school year, right in the middle of all my weekly chemo treatments. Adding a whole house move in the mix of it all would be insane. Insane!!

About mid August, I realized that my daily commute to work and getting the kids to where they need to be each morning was kicking my butt. I did two drop-offs last year as well, but cancer wasn't in the picture last year. Heck, I even enjoyed the commute. This year, I was really struggling to make it to work on time each day. Tony and I discussed possibly moving to the north Fontana area to be closer to my work, my parents, my brother, and to his brother.  The only con about this whole ordeal would be adding 30 minutes to Tony's daily commute. That's 30 minutes to an already hourly commute each way. However, in the long run, it is the best decision for our family, considering this journey is not over yet. Not even close. I have two major surgeries coming up in the next few months and I will need all the help I can get.

So, have we settled in yet? Nope. We still have things in boxes, but I can finally park in the garage. Tony scooted everything to the side so my car can fit. It doesn't feel like home. Coming home from work exhausted, then helping Matthew with his homework, dinner, baths, etc. You all know how it goes. Life gets in the way of unpacking and settling in. I need a day. Maybe two. Maybe three. Just to sit. Maybe lie down for a while. Maybe fold laundry. Or grocery shop. Or take a nice bath. Unpack some boxes. Think about life. Blog a bit. Catch up with friends. Or even forget about cancer. If only for a moment. I need a moment to breathe.

It's a Small World

Waking up from Benadryl, I look across the chemo suite and notice a woman that looks faintly familiar. It just can't be. No way. Not in a million years. A parent? Here? Getting chemo at the same time as me?  I get up to go to the bathroom and stop by her recliner. I jump right in and groggily say, "Ms. M...?" She looks at me, confused, and says, "Yes, that was my maiden name." "I was your daughter's teacher, Miss Vo, at the time." Her reply, "Oh my gosh." I proceed to the bathroom and come back to sit with her. We catch up with each other, both hooked up to machines dripping medicine into our ports. What a sight the two of us were. The nurses laughed and said, "You found a buddy?" What a small world. I had her daughter in my class about 9 years ago.

Here is her story: Two years ago, she was diagnosed with Stage 3 breast cancer. After having a mastectomy and two months after finishing chemo, she was told that the cancer had spread into her bones. When she had her surgery, 4 lymph nodes were removed, all of which were clean. How could this have happened? How did the cancer spread when the nodes were clean? No answer there. The doctors are now just managing her disease. She said it is not curable. I guess one is never cured of cancer. All of the nurses in the unit know and love her. After all, she has been going there for 2 years now.

I was so confident that after chemo and maybe radiation, then surgery, that I'd be free of this disease. Clean. But after that somber conversation, I realize that things aren't so certain anymore. I'm actually a little freaked out over a hard area that I found on my left chest, slightly above my first incision. I hope it's only internal scar tissue, but I'm anxious to ask the onc about it on Friday. Any odd changes in my body are more noticeable now, and I lose sleep over it. Especially when it is a hard lump.

 

Here I am on a Sunday morning, no makeup to smooth my skin, brighten my cheeks, or give me eyebrows. Just plain ol' me with a little help from Instagram. Have a great week, friends. 

Zzzzzz....

If I close my eyes right now, I will fall asleep right here at the computer. I am totally exhausted. The extreme temperatures are not helping at all. My Back to School Night was yesterday and I didn't get home until 8 pm. School events are always so stressful. I have to pick up the kids, then meet Tony at my mom's so we can trade cars. He takes the kids home first, while I rush back to school and eat my dinner before the madness begins. It's always a time crunch. All in all though, I had a wonderful turnout. My new teaching partner gave me a turban that I wore last night and it received a lot of compliments! Something different from the scarves that I've been wearing.

What I'm about to say is so pathetic, I'm embarrassed to admit it. August 14th, our wedding anniversary, came and went without either of us remembering the special occasion. It hit me the next day that we both totally forgot about it. How sad, huh? I had mentioned to Tony a few weeks ago that we should go out to dinner to celebrate, but when the day came, we treated it like any other school night. Dinner. Homework. Baths. Pick out clothes. Sleep. Is it possible that we both have chemo brain???

Taxol #3 is tomorrow. Last week, I got some funky muscle aches, but it went away within a few days. Thank goodness. Oh yeah, my brows and lashes are starting to go...I find lashes in my eyes every time I wash my face now. I knew I should've tattooed my eyebrows before I started chemo. Next time you see me, don't look too closely at my brows. Brow powder doesn't look like real hair.

A message to the BRCA1 gene mutation. @&%* you. I hate everything about you.

Taxol #1

Oh, chemo...how I hate you so. So here is how Friday went:

I left early from work to meet Tony at home. I scarfed down a sandwich in the car, as we were running a little late. I met with my onc first to discuss possible side effects. The biggest thing to watch out for this time is neuropathy. Half of the people receiving this medicine will not get any at all. The other half might get various degrees of it, some lasting forever. Although I will be getting chemo every week, I only have to see him every three weeks. He shared with us that he will be on vacation soon and that he's doing a timeshare thing! Wow, I really did not know that even an oncologist finds a way to visit Hawaii the cheap way. Don't they just book the Ritz and call it a day? Student loans gotcha, huh?

Anyways, we didn't get a private room this time. The chemo suite smelled really bad too, like...chemo. It makes me queasy just thinking about it. So, I got three pre-meds: Pepcid, Decadron, and the dreaded Benadryl. They are not in pill form (like with AC). Each one is a separate bag and it goes through my port, immediately into my body. She gave me the Benadryl first, so it would wear off. Before the drip started, Tony went to get coffee and by the time he got back, I was slurring my words so badly, I couldn't even communicate. It felt like the moment before surgery when the anesthesiologist gives you sleep medicine. I was super out of it, but I couldn't sleep. Once the Benadryl wore off a bit, I was able to get some work done (had to prepare for the 1st day of school).

Finally, the nurse started the Taxol-only after giving me 15 minutes of a "test" to make sure I didn't have an allergic reaction to it. The rest of the Taxol was given over an hour. By the time I finished, it was about 5:00. I was there at 1:40. There goes my Friday.

Ahhh....Monday was the first day of school. I felt almost 100% Monday morning. Just a bit tired, but who doesn't lose sleep the night before the first day of school, right? Yes, it's my 11th year, but I still get nervous. Every single time. Especially this year when I knew I had to explain why my head was covered. I know I've mentioned this before, but it's sooooo hard to match my clothes with my hats and scarves! Ugh. With this horrible heat wave, I should just go bald. Ha!

I sent home a sealed letter to parents letting them know about my diagnosis and treatment schedule. I also asked parents to speak to their children about cancer before we have an open discussion at school. Today, I spoke to my students about it and it went really well. Some of the kids were really sweet...saying they were sorry and they hoped that I feel better. Another one said she had a neighbor that died from breast cancer. Nice...thanks, but that's not going to happen with me. I told them we are going to party like no other when I start getting some fuzz on my head.

Friday is almost here again. *Sigh* I guess it just means that the next 11 weeks will fly by, right?

Matthew's first day of 1st grade

I got a major headache after the Benadryl drip.

Almost Forgot

I have been feeling so great these last few weeks that I almost forgot about the stupid cancer. No shots, no blood tests, no treatments...until tomorrow. I miscalculated the dates and it turns out that my first treatment of Taxol is actually this Friday, not next. This means that I have to get my blood drawn tomorrow, and it also means that I might not feel well on Monday, the first day of school. Boo.

My hair is also starting to grow a tiny, tiny little bit. Not enough to be noticeable to most, but I can feel the stubble. Peyton likes to rub my head before she falls asleep. Of course, one of the side effects of Taxol is hair loss. Another possible side effect is bone and joint pain and neuropathy. Lucky me. At least this time, the onc said that I won't need Neupogen shots.

I forgot to mention that I asked my onc about radiation. I was told early on by my breast surgeon that if I got a bilateral mastectomy, I will not need radiation. However, my onc said that I will need to see a radiation oncologist after chemo, who will then make the determination. A few years back, if someone had less than 3 positive lymph nodes, radiation was not necessary. Maybe things have changed. I had 2 positive nodes, out of the 17 removed. I hear that radiation is not as hard as chemo, but it requires a daily commitment. I am hoping that I will not need it.